Table 1 Selected articles on community engagement in biomedical research in Africa

1

Bandewar, S.V., Kimani, J and Lavery, J.V. 2010. The origins of a research community in the Majengo Observational Cohort Study, Nairobi, Kenya. BMC Public Health, 10,630. (Kenya) [35]

2

Boga M, Davies A, Kamuya D, Kinyanjui SM, Kivaya E, Kombe F, Lang T, Marsh V, Mbete B, Mlamba A et al.: Strengthening the informed consent process in international health research through community engagement: the KEMRI-Wellcome Trust Research Programme Experience. PLoS Med. 2011;8(9):e1001089. (Kenya) [44]

3

Chantler T, Otewa F, Onyango P, Okoth B, Odhiambo F, Parker M, Geissler PW. Ethical challenges that arise at the community interface of health research: village reporters’ experiences in Western Kenya. Dev World Bioeth. 2013 Apr;13(1):30-7. (Kenya) [17]

4.

Cohen E. Community Engagement in Globl Health Research: Case studies from the developing world: The Zomba District, Malawi Case Study. Masters’ Thesis 2008. Simon Fraser University, Canada. [21]

5.

The HapMap Consortium (2004). “Integrating science and ethics in the International HapMap Project.” Nature Reviews Genetics 5: 467-675. (global including Nigeria) [8]

6.

Cox LE, Rouff JR, Svendsen KH, Markowitz M, Abrams DI. Community advisory boards: their role in AIDS clinical trials. Terry Beirn Community Programs for Clinical Research on AIDS. Health Soc Work. 1998;23(4):290–7. [25]

7.

Fairhead, J., M. Leach, and M.. Public engagement with science? Local understandings of a vaccine trial in the Gambia. J Biosoc Sci. 2006;38(1):103–16. (Gambia)

8.

Family Health International. Community involvement in international research: lessons learned from the HIV Prevention Trials Network. Research Triangle Park, NC: Family Health International, 2006. (International including Tanzania, Uganda, Zimbabwe, Zambia) [6]

9.

Grinker RR, Chambers N, Njongwe N, Lagman AE, Guthrie W, Stronach S, et al. “Communities” in community engagement: lessons learned from autism research in South Korea and South Africa. Autism Res. 2012 Jun; 5(3):201-10. doi:10.1002/aur.1229. Epub 2012 May 4. (South Africa) [32]

10.

Kamanda A, Embleton L, Ayuku D, Atwoli L, Gisore P, Ayaya S, Vreeman R, Braitstein P. Harnessing the power of the grassroots to conduct public health research in sub-Saharan Africa: a case study from western Kenya in the adaptation of community-based participatory research (CBPR) approaches. BMC Public Health. 2013;13:91.

11.

Kamuya, D. M., V. Marsh, et al. (2013). “Engaging communities to strengthen research ethics in low-income settings: selection and perceptions of members of a network of representatives in coastal kenya.” Developing world bioethics 13(1): 10-20. (Kenya) [45]

12.

Koen J, Essack Z, Slack C, Lindegger G, Newman PA. ‘It looks like you just want them when things get rough’: civil society perspectives on negative trial results and stakeholder engagement in HIV prevention trials. Dev World Bioeth. 2013 Dec;13(3):138-48. (South Afria) [52]

13.

Lang T, Gould J, Seidlein Von L, Lusingu JP, Mshamu S, Ismael S, Liheluka E, Kamuya D, Mwachiro D, Olotu A, Njuguna P, Bejon P, Marsh V, Molyneux C: Approaching the community about screening children for a multicentre malaria vaccine trial. Int Health 2012, 4:47–54. (Kenya) [48]

14.

Marsh V, Kamuya D, Rowa Y, Gikonyo C, Molyneux S: Beginning community engagement at a busy biomedical research programme: experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Soc Sci Med. 2008;67(5):721–33. (Kenya) [16]

15.

Magnus M, Franks J, Griffith S, Arnold MP, Goodman K, Wheeler DP; for the HPTN 061 Study Group. Engaging, Recruiting, and Retaining Black Men Who Have Sex With Men in Research Studies: Don’t Underestimate the Importance of Staffing-Lessons Learned From HPTN 061, the BROTHERS Study. J Public Health Manag Pract. 2014 Jan 9. (South Africa) [36]

16.

Mitchell K, Nakamanya S, Kamali A, Whitworth JA. “Exploring the community response to a randomized controlled HIV/AIDS intervention trial in rural Uganda.” AIDS Educ Prev. 2002;14(3):207–16

17.

Morin, S. F., A. Maiorana, et al. (2003). “Community consultation in HIV prevention research: a study of community advisory boards at 6 research sites.” J Acquir Immune Defic Syndr 33(4): 513-520. (South Africa) [23]

18.

Morin, S. F., S. Morfit, et al. (2008). “Building community partnerships: case studies of Community Advisory Boards at research sites in Peru, Zimbabwe, and Thailand.” Clin Trials 5(2): 147-156. (Zimbabwe) [22]

19

Mosavel, M., C. Simon, et al. (2005). “Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question.” Soc Sci Med 61(12): 2577-2587. (South Africa) [41]

19.

Nakibinge, S., D. Maher, et al. (2009). “Community engagement in health research: two decades of experience from a research project on HIV in rural Uganda.” Trop Med Int Health 14(2): 190-195. (Uganda) [37]

20.

Nyika A, Chilengi R, Ishengoma D, Mtenga S, Thera MA, Sissoko MS, Lusingu J, Tiono AB, Doumbo O, Sirima SB et al.. Engaging diverse communities participating in clinical trials: case examples from across Africa. Malar J. 2010;9:86. (Mal, Tanzania) [43]

21.

Ntshanga SP, Ngcobo PS, Mabaso ML. Establishment of a Community Advisory Board (CAB) for tuberculosis control and research in the Inanda, Ntuzuma and KwaMashu (INK) area of KwaZulu-Natal, South Africa. Health Policy. 2010;95(2-3):211–5. South Africa. [28]

22.

Okello G, Jones C, Bonareri M, Ndegwa SN, McHaro C, Kengo J, Kinyua K, Dubeck MM, Halliday KE, Jukes MC, Molyneux S, Brooker SJ. Challenges for consent and community engagement in the conduct of cluster randomized trial among school children in low income settings: experiences from Kenya. Trials. 2013 May 16;14:142. (Kenya) [23]

23.

Participants in the Community Engagement and Consent Workshop, Kilifi, Kenya, March 2011 Consent and Community Engagement in diverse research contexts Author(s): Source: Journal of Empirical Research on Human Research Ethics: An International Journal, Vol. 8, No. 4 (October 2013), pp. 1-18 (Global including Africa) [15]

24.

Reddy P, Buchanan D, Sifunda S, Shamagonam J, Naidoo N. The role of community advisory boards in health research: Divergent views in the South African experience. SAHARA J. 2010;7(3):2–8. South Africa. [24]

25.

Seeley, J.A., Kengeya-Kayondo, J.F., and Mulder, D.W. (1992). Community-based HIV/AIDS research — whither community participation? Unsolved problems in a research programme in rural Uganda. Social Science and Medicine 34(10):1089-95. (Uganda) [34]

26.

Simon Christian, Mosavelb Maghboeba, Stade van Debbie. Ethical challenges in the design and conduct of locally relevant international health research. Social science &Medicine. Vol 64, Issue 9, may 2007, Pg 1960-1969. (South Africa) [29]

27.

Stadler J, Dugmore C, Venables E, MacPhail C, Delany-Moretlwe S. Cognitive mapping: using local knowledge for planning health research. BMC Med Res Methodol. 2013;13:96. South Africa. [51]

28.

Strauss, R. P., S. Sengupta, et al. (2001). “The role of community advisory boards: involving communities in the informed consent process.” American journal of public health 91(12): 1938-1943. (South Africa) [26]

29.

Shagi C, Vallely A, Kasindi S, Chiduo B, Desmond N, Soteli S, et al. A model for community representation and participation in HIV prevention trials among women who engage in transactional sex in Africa. AIDS Care. 2008;20(9):1039–49. South Africa. [30]

30.

Shubis, K., O. Juma, et al. (2009). “Challenges of establishing a Community Advisory Board (CAB) in a low-income, low-resource setting: experiences from Bagamoyo, Tanzania.” Health Res Policy Syst 7: 16. (Tanzania) [27]

31.

Strauss, R. P., S. Sengupta, et al. (2001). “The role of community advisory boards: involving communities in the informed consent process.” American journal of public health 91(12): 1938-1943. (South Africa)

32.

Tedrow VA, Zelaya CE, Kennedy CE, Morin SF, Khumalo-Sakutukwa G, Sweat MD, Celentano DD. No “magic bullet”: exploring community mobilization strategies used in a multi-site community based randomized controlled trial: Project Accept (HPTN 043). AIDS Behav. 2012 Jul;16(5):1217-26. (Multi site including South Africa) [39]

33.

Tekola, F., Bull, S. J., Farsides, B., Newport, M. J., Adeyemo, A., Rotimi, C. N., & Davey, G. (2009b). Tailoring consent to context: Designing an appropriate consent process for a biomed- ical study in a low-income setting. PLoS Neglected Tropical Diseases, 3(7), e482. (Ethiopia)

34.

Tindana, P. O., L. Rozmovits, et al. (2011). “Aligning community engagement with traditional authority structures in global health research: a case study from northern Ghana.” American journal of public health 101(10): 1857-1867. (Ghana) [5]